by Sarah | Jul 16, 2012 | All About Kennedy, Hypotonia, Special Needs, Tibial Torsion
We have a lot on our plate.
Something is bound to slip.
Yes, we try to live beyond our labels, but it’s only through treatment of those labels that we manage to survive and keep going.
But really, with a child as unique as Kennedy, something was bound to slip. Or a couple of somethings.
The one thing we’ve let slide. The one that’s slipped through the cracks.
Is the one that used to consume me.
Despite the CF, the anger issues – this one thing consumed me. Physical Therapy, taping her legs, taking her to the orthopedist.
Tibial torsion – complicated by hypotonia. Pigeon toes to the layman.
As you can see by the above picture (it’s not the best picture of it, but all my others are lost in files) it used to be severe. Her right foot in casual standing turned all the way into her left. Her left turned in a wee bit too.
Every time we went to the ortho is was pushed off and shoved aside. The ‘age of correction’ (i.e. braces or surgery) got older and older (we started at 4, then 5, then 6, then 8) until I put ortho’s at the top of the list of doctors I didn’t like or trust. It got to the point where I ignore it.
We were told that it would “self-correct” that her muscles would naturally pull them out as she got older. When we pointed out the fact that she has truncal hypotonia so the muscles weren’t strong to begin with we were dismissed and told “I wouldn’t even do physical therapy, it’s pointless.”
Um…WHA?
Now she is 6 – one of the ages – and what’s it like now?
There’s been some self correction.
Not enough. We’ve ignored it to a point. With everything else going on, it’s easy to ignore.
Until a walk around the zoo gets her ‘tired’ very fast…and when you look down, the feet are turning in more and more the more tired she gets.
It’s still a problem for her.
She doesn’t have the stamina of her friends – and I’m not talking the lung stamina – I’m talking the muscle stamina.
I’m tired of being dismissed by ortho’s.
But when do we attack it again?
Or do we?
Do we keep ignoring it and hope it goes away?
by Sarah | Jul 12, 2012 | 45 before 45, All About Me, Blogging Life, Bucket List
2012 is proving to be a year for me to Kick the Bucket…List.
So far, just this year, I have crossed off 6 items & I’m poised to cross off one more this week, and at least two more by September. Granted this is technically my 45X45 list – but I’m thrilled with my progress this year.
My favorite item that I crossed off is the all important #3. Seeing my name in print. And look at that…in print!
Without even realizing it, I’m putting myself out there and doing more things – and I’m crossing things off the bucket list without even realizing that they’re there! Of course, some of those achievements are thanks to my peeps…the local blogging community is great for putting things out there for me to hop on board with!
So 2 years after creating my 45X45 list and with 9 years left I’m 20% through it. Now I just have to figure out what I want to cross of next year! For that matter, I’d love to repeat a couple of them (like the blog conference – loved that…want to do it again!).
So what should I do next – that I haven’t already planned to do?
For that matter…what isn’t on my list that you think should be? Should I move my “done” stuff to the side and add in new challenges?
by Sarah | Jul 11, 2012 | General, Writing, writing tips
You’ve edited your manuscript to a fine work of art.
You’ve researched where you’re sending it.
You put your ‘baby’ out in the world.
Now what?
Authors, especially first time authors, have these horrifyingly bad-for-your-ego lengths of time where you wait.
Every email you get is hope that it’s “the one” followed by crushing disappointment that it’s spam, or just a family member, or anything other than the agent or publisher you’ve submitted to.
When the agents, or publishers, ask to see more there’s an even worse period. Now it’s more than the query. They have it all.
Having recently gone through a period like this (will not state whether or not I’m still in one) – I joked about a survival kit, and then got serious. I asked my friends what they’d put in a survival kit for an author in this position.
Overwhelmingly the answer was…
ALCOHOL.
Huh…go figure.
But we did get a few more fun & creative responses…
- Anti-depressants
- Man-candy (then again, we can use this all the time, no?)
- Chocolate
- Barf Bags
- A dark corner to put yourself in
- A box of tissues for your uncontrollable sobbing
- A book called “How to stalk potential editors – the RIGHT way (i.e. don’t be a creep)”
- Bath salts
- A movie with a kick ass heroine
- Video games (b/c those are always awesome)
- Tea
- Art/Photography – any visual stimulation
- The website One Hundred Famous Rejections
I think the most important thing that is missing from this list isn’t something you can put in a basket.
It’s friends who’ve been there. Who understand when you go to them and rail and cry and whine and let out those frustrations. Who support you and remind you where you’ve come from and how far you’ve gotten. Who don’t give up on you, when you’ve given up on yourself.
I’m grateful to have a circle of friends, old and new, that are right there fighting the good fight with me. That have been where I am, and both support me and offer me words of wisdom and helpful critiques of my work.
So…Mary, Jennifer, Fi, Eden, Sabrina, Ellie and Tonya…thanks for being in my life. On the days I feel like quitting – so glad I have you around to remind me why I’m where I am…and what’s coming just around the corner.
And lastly, the most important thing I have in my basket. The world’s most supportive spouse. Erik…you rock. When I had to make that incredibly difficult decision regarding my novel recently – you helped add in both a voice of reason and of incredible support.
So make up your basket today. Don’t forget that support system. It means more than all the man-candy and chocolate in the world.
by Sarah | Jul 2, 2012 | All About Erik, All About Molly, Autism, Special Needs
[flickr id=”7089103379″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Erik is in his 40’s now. Many years have passed since he’s had to live through school, classmates, the pressures of schoolwork.
But he still remembers.
The stress.
The desire to get away from chaos.
His ‘coping’ mechanism that gave kids a way to pick on him.
The “other”-ness he felt.
From day 1, Molly’s uncanny resemblance to her Dad has echoed in every picture, every look, every nuance and quirk.
It’s been both a source of great joy for him – and a source of great fear.
You never want your children to feel the pain you did.
And when you have one like Molly – one that struggles to express herself.
You don’t always know.
But sometimes you do.
You see it in her eyes.
You feel it in your heart.
Every day this past year I worried over Molly’s separation from her classmates.
It leaves me to wonder – how much does she know it? How much does she feel it? Will she remember when she’s in her 40’s? Or have we been able to spare her some of the pain? How long will these issues echo in her life, even with appropriate therapy?
The saving grace in her life is her sister.
Kennedy is the social butterfly to Molly’s cocooned existence. Kennedy relates to her when others can’t. For now, at least, Kennedy is her safe place.
If only we could keep her from beating the crap out of her safe place.
by Sarah | Jul 1, 2012 | All About Indiana, All About Me, Blogging Life, Community, Indy Geek Girls
For approximate forever I’ve been wanting to see Cirque du Soleil. So when Emily hosted a giveaway I ran over to sign up to enter.
I literally bounced around in my seat when I got the email telling me I won.
My wonderful husband Erik was a no-go on tickets. For some reason the man has something against men in spandex. Me? I have no such qualms – but I needed a date.
Of course the first person I asked was the person I told I would ask if I won – Casey. Then, to give us a proper ‘girls night’, Emily’s husband backed out to leave room for Shireen – and our party was complete.
I’m not sure what I was more excited for – Cirque, or girls night.
For dinner we did Santorini’s with a little OPA!! (i.e. saganaki) thrown in. I shared the Chef’s special with Casey…and if there had been more of the Spanokopita we might have had a throw-down over it – it was that good.
Then it was onto Quidam.
Casey described it as a panic attack brought to life (the first half). While filled with impressive feats of strength and agility – the amount of disturbing images included left us a little disoriented.
The second half by far topped the first, disturbing imagery and all. I absolutely loved it and would go back again – just not to Quidam. I’d pick another show. While I loved all the artistry and amazing acts – I think my favorite was the Clown. He brought in some audience participation and laughs that were needed among floating zombie heads and gaping chest wounds (yes. You read that right).
Then again, my real favorite part of the night was getting out with friends. Laughing and sharing the evening with them. Spending time with people that are like me and share the same interests and struggles. It’s something I don’t think I do often enough. it’s easy to get lost in responsibility – sometimes we need to get lost in laughter with friends to make the rest of it possible.
*~*~*
Photo credit to Cirque du Soleil. We weren’t allowed cameras 😉
We have a lot on our plate.
